On chat and in the postings on the board I encounter many caregivers who are new to the stroke scene. Like most of us they were previously unaware of stroke and the effects that it has on families. Anyone who thinks that a person in isolation has a stroke and it doesn't have any effect on those around them soon gets disabused of that theory. We are affected in proportion to our liking or involvement with the person who has had the stroke. How deeply we are affected depends on the depth of our love and affection and attachment to the person. But we are all affected in some way. More so if it is a spouse, a child or a parent, someone who is important in our lives.

Sometimes when I rush in to post a reply to the newbie I make statements that come out of my own experience. Sometimes it is not something they are going to understand or accept right away. Sometimes it isn't what they really want to hear of course. I never thought I was a fairy godmother and could wave my magic wand and make it all go away. I am on the same journey they are on, just further down the track. And maybe from that perspective I can offer support and advice and be a sounding board for others. I hope that is how it works out anyway. That is why I am a chat host and post whenever I think I have something relevant to say on the newbie caregiver threads.

I have been on the caregiver journey for nine years and have gone through so many stages, loss, grief, denial, bargaining etc, I have done the reseach, attended the meetings...and do you know what? it still throws me for a loop sometimes. I go right back to the beginning of the cycle with each new thing that happens to Ray, if he has a fit, a seizure, what seems to be a TIA, another fall, all those things will recall the earlier events and I will for moment or two feel unable to cope, uncertain how to go on etc. I guess the difference for me is that I soon go into thinking mode again and work out what to do.

On the whole we do very well with Ray's deteriorating condition. He doesn't have a long attention span now and his short term memory is not good but he can enjoy the moment and that is what counts really. Of course I am struggling with his erratic BMs and his slowness and his unwillingness to co-operate some days and his sneaking sweets that send his blood sugar readings sky high etc. But that is part of our realationship, we are a married couple who 40 years ago said: "for better or worse, in sickness and in health etc" All of this is just part of the reality we live with every day.

My Mum, who has been on her own journey with Alzheimers for the past nine years, has now been in her room in the Dementia Lodge six years and is the longest resident there at present. To me she is just a walking empty shell now but I visit her twice a week and relate to her as much as I can, talking to her, telling her stories, even sometimes jokes just to see if she will smile or laugh. Sometimes I just sit rubbing her back or holding her hand. I take her magazines and read something to her or just turn the pages until something catches her attention. She may have macular degeneration and be half blind but without her being able to speak cannot be tested for that now. I sing as we walk around the inside walking track at the Lodge. That is so she knows I am there and looks at me from time to time. The staff are used to it now so pop out of rooms and say: "Hi Sue" as I pass by walking round and round with Mum. I try to fit in with what is going on at the Lodge as that is Mum's "home" now and the other residents and staff are her neighbours and her family for this part of her life.

I have found through all this experience that life is what you make it. If you drop the "poor me" attitude and realise life is what YOU make it, there is still a lot of good in life. It is a new day every day of course and if Ray is unhappy and unco-operative not such a good day but today he was content to do whatever I did and that worked well as I had a breast screen appointment and then we had some lunch and a wheelchair wander around Erina Fair. So a good day. Now he is under his covers having a nap and by the time he gets up it will be dinner time.

This is my life and there is no sense in wishing for another. There may be changes and challenges ahead but at least I still have enough intelligence to cope with it. And if the saying "two heads is better than one" no longer applies, one good mind thinking for two has to do the same job. Life is a journey and there is no sense in looking back along the way we have come and longing to go back to where we once were, nor is there any sense in sitting and sighing and saying: "Are we there yet?"